Our DNR states. Dear Dr. (Dr.'s
(Your child's name) suffers from
Hydranencephaly. His condition is thought to be fatal, although the
length of (child's name) life cannot be determined at this time. With
full awareness of (child's name) limited life expectancy his parents
have elected to continue to make his life as normal as possible at home.
Should (child's name) die at home, cardiopulmonary resuscitation should
not be attempted. Neither isi t necessary for his body to be taken to
the hospital at the time of death. The family resides at (your address).
For further information, please
contact (your Dr.'s name at whatever hospital location).
"My husband and I have both copies
of the DNR order and we have the choice to use it or now. The Drs have
told us to use our discretion. Basically if we choose to have (child's
name) life saved, we obviously would determine it on the situation. We
have full control."
This is our government's advance
directive form for children.
On the first page is name and personal info like that.
A. Cardiopulmonary Resuscitation (the instruction below applies only
should the child have or develop a terminal illness or be in a state of
1. Do not resuscitate (no cardiac compressions, endotracheal intubation,
advanced airways management, etc)
2. Initiate basic and advanced cpr
3. No decision about resuscitation is made at this time.
If the Dr checks #1 then there is a signature at the bottom with a date
when this directive expires (it needs to be reviewed every 3 months I
On page 2
B. Levels of intervention-in the event of an irreversible (irreversible
is underlined in the original) life threatening illness leading to
imminent death or of natural end of life, direction is given to provide
the following: (indicate 1):
Level 1: Do not transfer to Hospital (supportive care only (ie;
nursing care, pain and other symptom relief, oral nutrition and
hydration, psychological and spiritual support)
Level 2: Do not transfer to hospital Therapeutic measures and
supportive care without transfer to an acute care hospital (includes
measures from #1 as well as medications such as diuretics or antibiotics
if indicated.) No transfer to acute care hospital unless adequate
comfort measures cannot be provided.
Level 3: Transfer to acute care hospital if necessary but excluding
admission to an intensive care unit.
Level 4; transfer to acute care hospital with maximum therapeutic
effort and if necessary admission to the intensive care unit.
5. No decision about degree of intervention is made at this time.
C. Other specific health care instructions:
For Kayda when we realized her life would end in the near future we
specified the following:
1.All medications to be continued
2.Tube feedings as tolerated
3. Only cardiac arrest and respiratory arrest are not to
be treated-all other symptoms/conditions are to be treated
4. Comfort is primary concern.
This form is what we filled out about 2 months before Kayda died. Prior
to that (the form wasn't developed until near the end of Kayda's life)
the boxes indicating maximum treatment would have been checked.
Another point of view
This is how one family describes
their decision making process when it comes to critical health care
decisions for their child with Hydranencephaly. It is written by the
"My daughter has been told - as everybody with an ear to listen "take
her home...she should die before the weekend is over!!" Well, for Sarah
we have a 'kind of' directive. We always take her to the same
hospital---Mercy Hospital of Pittsburgh. We know EVERYBODY on the peds
floor from Housekeeping to
The Head of Peds NICU. Dr. Howard, (he has put us all on a first name
basis since Sarah's first 'visit' to the NICU unit) knows our feelings
and he agrees with this....as long as 'we' are doing things FOR Sarah
then ok! Once we start doing things TO Sarah - well that's when we DRAW
This does NOT mean Sarah doesn't go on a respirator - if she has
pneumonia and they need her to completely 'save her energy' to
heal....they will put her on the respirator. Then she does NOT have to
concentrate on 'breathing' &'getting better'. The breathing at that
point is done FOR her!
Return to words of wisdom page